Chemo treatment

[Cindi54]

Hi Jennifer66,

I'm also like you, diagnosed with Invasive High-Grade Urothelial carcinoma, multiple foci of lymphovascular invasion, but my Onc said they call it Bladder cancer, so I had to have the kidney and ureter removed (involving part of bladder) and I'm on the chemo to mop up any escaped microscopic cancers, as it had spread into muscle & fat.

Today I'm not feeling as bad, I had a coffee this morning without the smell putting me off! so that's a plus😊

If I was you, I'd contact your chemo nurse and ask her a lot of questions, or wait to fire them at your Onc, maybe write it all down , the questions & answers so you remember.

Perhaps it would be a good alternative for normal chemo treatment? I know what you mean though, I also like to get as much info as possible, it's your body so you need to know as much about the treatment as you can.

I hope everything goes well for you.

I go back for more chemo on Thursday but just the Gemcitabine this week, so without the Carboplatin I hope it's a little easier.

I haven't lost my hair yet and hope not to, but I still don't know if I will or not.

I just want to get it all over and done with and work my way back to my original fitness and life.

At the moment, just walking up the road for 5 minutes makes me breathless, I used to be able to go to my gym for 2 hours most days. Can't wait to be finished and do that again ( slowly!)

Please don't let me scare you, your chemo sounds very different, you may find it very tolerable.😊

Cindi x

[Jennifer66]

Hi Cindi54

so good you went through chemo a lot better I hope this week goes well for you

Im not really sure how lymphovasular is bladder cancer I haven’t seen or heard that anywhere

but as bladder cancer predominantly a male cancer good to talk with a female  who also has bladder cancer 

I spoke with my professor today and he is sending me some info on mitomycin hot chemo.  I understand hot chemo is very expensive and as only a few places in Australia  do it, therefore not that common. I don’t want to go through it as a bandaid solution as the chemo has to reach and go into my ureter and there  is no guarantee this will happen, as my professor has told me gold standard would be a total Cystectomy and I  do realise this is what I should be going with as a Highgrade T1G3 and as I have been told multiple times my case has been very complex and complicated. I have a stent in my ureter which I have changed every very months, I have gone through 8 surgeries since December 2022 of TURBT uterscopy biopsies Cystoscopy. 12 rounds of BCG and 3 of intravesical chemo, which is how bladder cancer is treated with chemo and if I ever thought I was going to die it was when two days after my third chemo I came down with pneumonia when I was so sick 

we are going away so in a couple of weeks and when we are back I  will need to make a decision as if I go with hot chemo I need to have another TURBT surgery to remove the tumours, to see if I’m even suitable to go with the hot chemo 

I wish you good thoughts your treatments have you feeling a lot better 

[Cindi54]

Oh @Jennifer66, You certainly have been through a lot, wow.

I had my right kidney & ureter removed, can I ask why they didn't do that for you?

My kidney was a bit damaged from the large size of the cancer in ureter blocking the kidney, so they thought it my best choice really.

One can cope fine with one kidney.

I'm so sorry for you, very difficult decision and NO you don't want just a "band aid" solution.. find out AS MUCH as you can, I like to do that too.

So sorry you still have a stent in, I had one but only for a week or so. Not nice.

Please keep in touch, you are the only person I've found with a Ureter cancer ( even though they call it Bladder cancer)

Sending you a big hug,

Cindi xx

[Jennifer66]

Hi Cindi54

it has been so nice to talk with a female 

especially with ureter cancer, I haven’t heard it called bladder cancer, but I do have bladder cancer High Grade T1G3. I don’t have any kidney cancer and my 

bladder cancer is not in muscle, the reason my ureter has not been able to be resected is too risky as I have bladder cancer and cells could  possibly ‘field’ outside bladder, the ureter cancer is at bottom working its way up, I have had a stent in since December 2022 I have it changed every couple of months, the stent is to keep it open, I have no problems at all wouldnt even know it was there 

apparently not common for ureter cancer and bladder cancer together and even more uncommon in females 

the Mitomycin C chemotherapy is used in bladder cancer but heating it is very expensive and not used that often 

my case I’ve been told many times is complex and complicated and  I know Ive only got two options left 

the Hot Chemo with a 25% successful or ‘gold standard’ bladder removal then ureter would be resected and reattached 

I do hope your chemo is going a lot better and your feeling a lot better 

😘😘

[Cindi54]

Hi Jennifer66,

It sounds complicated, you poor thing, it's so not fair is it.

How did you find out? did you have blood in your urine or what?

You have big decisions to make, if it was me I think I'd try to follow what the Onc thinks is best, it's hard putting your life in another's hands, but they should know what would work best for you.

If you have the bladder removed, would you need to have a bag where the urine goes?

I understand what you mean about the worry of microscopic bits of the cancer escaping, I worried also about that, and maybe that's why I'm having chemo now, to "mop up" any stray cancer cells.

I hope you keep in touch, I'd love to know how you're going , and I really wish you best of luck with it all.

Hugs from Cindi xx❣️

[Jennifer66]

Hi Cindi54

im good Cindi I am completely painfree and only really ever had any pain last year back and right lower pain but was told all stent related and all I needed was Panadol , I have never ever had blood in my urine only microscopic blood my symptoms were I needed to pee  all the time and I still do but not quite as often. Bladder cancer is pretty much a male dominated cancer from prostate and ureter and bladder cancer together in a female not common. But I am good I have gone through 12 rounds of BCG and 3 intravesical chemo and had no after affects other than tiredness 

nobody would know there is anything wrong with me or neither would I, if I didn’t know so you can understand my reluctance to want to go through anything. And yes if I was to go with cystectomy I will need to have a stoma bag. I have thought about going that way but as I’m well it’s a big surgery and I have defied all odds so far. The Heated Mitomycin C is only successful in 25%. Life is good and I think I may be happy to gamble on this life journey 

I hope all going well with you and all meds working for you now 

big hugs and thanks so much for the communication something I’ve really never had  

[Jennifer66]

Hi Cindi54 

I know what you say go with what doctors say, they say a lot but they don’t tell you what to do, as not there job to do that, they give options and my first  BCG which I was always going to do and it has been as successful as much as it can be then for a year now cystectomy total bladder removal and as I have always been well not an option I ever wanted as it is a major surgery. We were going away last Christmas and over the year I was told twice I would be lucky to see Christmas our holiday was booked well before I was diagnosed and I insisted I was still going and the reason I had the chemo, I couldn’t have full 6 treatments as I contracted pneumonia after the third, and I really thought I was going to die, it changed my whole cancer perspective as I was always well 

I changed doctors this year and Heated Chemo has come up as an option, the professor I’m seeing works at both Peter MacCallum and Royal Melbourne and this is one of only a couple that do it, but is not his choice of an option although he hasn’t said that as such 

and all medical professionals I’ve seen have always said it is my choice they give best option but always say your choice and I think that is why it is so hard to make decisions what is best to do or not do 

And that is why our brains work like tumble dryers

i feel like I need to laugh !! 
we over think constantly that we end up with no plan 

😘😘😘

[Cindi54]

Hi @Jennifer66 ,

Oh yes, now I understand what you mean, and I totally know the "tumble dryer" the thinking can be!!😅

I often find myself over thinking.

Wow, I'm sorry about how the chemo caused you such damage, very frightening for you.

Was that caused by the harshness of the chemo on your body? I presume so?

My chemo, mainly the Carboplatin drug causes my tinnitus to get terribly bad, so I think they are having to adjust my chemo strength, because it can damage my hearing so much that the tinnitus can become permanently horribly loud constantly.

Why do you think your specialist doesn't recommend the "heated chemo" ? surely it's better to try this before such radical surgery of removing your bladder?

If it was me I'd probably go for that as it sounds like it just targets the cancer not your whole body which sounds safer than normal chemo.

Obviously you can't do that again ( normal chemo) Maybe ask your professor what HE would do if it was him or a family member.( his wife?)

But i can completely understand how you are hesitant, you've had a very hard time with treatments, so of course you are skeptical and need as much info as possible.

You've had such a hard time, I'm really sorry.

Sad we aren't in the same states or we could've met up for a coffee or something to support each other.

I haven't found anyone else at chemo or anywhere actually, with the same sort of cancer as us.

Glad for this forum though.🙂

xxxx

[Jennifer66]

Hi Cindi54 

I think you have misunderstood my post, 

I have never had any problems with any treatments I have gone through them all no

problems at all. The pneumonia not caused by chemo I contracted that two days later and would have been 

an infection picked up at hospital as only had been to hospital and home no where else  and doctors said  that very unlikely I had infection prior. Chemo even the hot chemo will not cause any problems anywhere in my body for me as is only in one place does not go anywhere as is only inserted into my bladder and cannot get out until released 

it’s not that the professor doesn’t want me to go with hot chemo he has told me it’s an option but gold standard is major surgery as I am high grade T1G3  and the tumours are sitting on muscle lining once they get into muscle they are in your body lungs liver bones to start and  as ureter cancer will then be in kidney my immune system has fought these tumours that keep coming back but have not got into muscle for 18 months now 

the hot chemo has a 25% success which not a good gamble 

So even though I’m well have had  no affects with treatments they  only work for so long and as my tumours have constantly come back I don’t have much choice but life as it is, is pretty good 

😘😘

[Jennifer66]

Hi Cindi54 

it is really nice to talk with you, but I’ve never had chemo like you have, which has really been hard on you, 

yes, how nice would it be to catch up never in all my treatments has there ever been a female they have always been men 

Did you have bladder cancer or was it only ureter cancer, as I have been told my ureter cancer is rare and uncommon to have ureter and bladder in  females and why my case has been complex and complicated 

You  seem to have gone through a terrible time especially with your chemo 

and like you I  don’t really talk to anyone 

What state are you in? 
😘😘